More hair loss and new shoes

My poor baby has lost a lot of hair. And Dr Danny says that it will probably not regrow on the top of her head, the rest he advices waiting a good 18 months before giving up hope. As my husband put it, it looks like someone has cut a motorway through the forest of her hair. She has a good 5cm wide strip that starts at the back of her head, fairly central and at the bottom of her skull, it goes up to the top of her head where it gently curves towards the left and comes back down in front of her ear. It comes further forward than we had imagined. We also thought that the area would include the area of her scar, which is already thinned,  but it seems to snake around that leaving her with very little hair on the left side of her head. I have attached a couple of photos to give you an idea- she was sleeping when I took them! At her eye level and in front or from her right she looks ok. I think the hair is still falling out slightly so we really don't know how it is going to end up. The hairdresser is coming in to RMH on the 18th so I am going to see if she has any ideas. Millie will be like this for a long time - it isn't really like other patients that lose it through chemo, theirs grows back fairly quickly. And it is going to take me a while to get used to it. She doesn't seem bothered yet, she does seem to know that her hair is falling out and has been heard saying so. We haven't talked to her about it but she must have picked up on the conversations we have been having over her head. It probably feels strange as well. She has dry skin on her scalp, she always has had and what can be seen now is nothing to do with proton. Amy has given us some thick cream to use twice a day but not for 4 hours before her treatment because it can have an effect on the passage of the beams. The last thing we want.

Despite the hair loss she is doing amazingly well. She had OT this morning at 9am which involved some interesting new things. Previously the sessions have been pretty mundane and not overly challenging. They have all involved threading, bricks, jigsaws and colouring. Today, Grace our therapist had Millie doing her threading on the swing, then she did colouring on a soft mat, then colouring on the wall whilst standing on the soft mat and finally Millie did a jigsaw whilst lying on a large red ball! She did really well at all of it and was ready to leave when we were told that there was a PT cancellation slot available now with Paul. She was worked hard in PT as well, up and down ramps and stairs, kicking balls, lots of bending. At the very end she was so tired she had a meltdown and refused to do any more. Fair enough. She is getting stronger and I noticed yesterday that she was able to bend down and pick things up from between her feet without wobbling. She is also more stable when 'running', she fell over last night for the first time in a few days. And even that was more of a bad trip when over tired. She loves running around outside after tea, just a shame it is still so hot and the biting insects attack so much.

I had hoped, and assumed, that she would fall asleep either on the way back to RMH after therapy or on the way to proton. I had made myself a coffee and put it in an insulated cup to drink when she was asleep - she didn't so the coffee went undrunk! She was wide awake when we got to proton so we played in the waiting area playroom for a while before going round to see Kendra and Gina to see if they had a red train. The posted gantry times said that the red gantry was running 20 minutes late but when we got round to recovery they still hadn't taken Ollie in. Gina was putting his line back in (he has a port which is under the skin and means the line can be removed for the weekends) and she and Ollie's mum suggested that Millie watch. Millie did and then got upset when they took Ollie off so we distracted her by trying to find a red train (fortunately they had 2!). We were in there for a good half hour and Millie was really calm and happy to play - so unlike her. When it came to her turn she let Gina 'take her numbers' which involves ear temperature, blood pressure and 'magic finger' heart rate and sats. She was a star and let Gina do everything without a single complaint. Gina gets a lot of credit because she got right down to Millie's level and took it at her pace. When it came time to get a wiggly out for its drink Millie started being a bit reluctant but I let Gina work with her and Millie 'helped' to push the water. She then got Millie to hold her wiggly whilst she got the syringes ready for taking blood samples, or "Let's see if your wiggly has any raspberry juice". Millie didn't flinch. She had a wobble when Gina fitted the 'straw' or drip line but we were able to distract her from that fairly easily. When it came time to going into the gantry Millie again had a little wobble but was easily distracted and although aware that the anaesthetic was going in only gave a quiet whimper before passing out very gently on my shoulder. The whole thing was so much more relaxed than it has been previously. It is such a relief. And she woke up really well after 45 minutes sleeping post anaesthetic. She ate loads and was off the bed within minutes!

We saw Dr Danny and answered the various questions about her health. She hasn't lost her appetite, her energy levels are normal, she hasn't had any pain or discomfort, she doesn't have any red patches on her head. She is doing well. I guess it is good when the doctor whisks away after a very brief consultation. We did manage to get him to contact one of the nurses who knows about protecting wigglies from water and sand. He is very supportive of taking Millie to the beach as suggested by the physiotherapists. The nurse has ordered some AquaGuards (or something) that are plastic patches that you stick over the wiggly to keep them sealed in a clean and dry environment. We can pick them up from Nemours pharmacy tomorrow. Beach soon then! Assuming Millie lets us anywhere near her with them but I'm sure she will once we explain that she needs them for the beach.

After a long time at proton we decided to go and get Millie some shoes. When she was in the bath the other night I noticed that her big toes were looking red at the tips. I had been wandering for a few days but that confirmed that she had grown!!!! We only bought those shoes 6 weeks ago. I asked one of the staff if they could recommend somewhere to get real proper fitted shoes. So we went this afternoon. We spent an hour in the shop - the shop assistant was really good. I explained that I wanted shoes that gave her good support whilst she is learning how to walk and run. We have come away with 2 pairs of good shoes. Oh yes, she has grown, at least one size. Her shoes say size 6, her new shoes are a size 8. I think there is a slight difference in the sizing but she has definately grown - typical child! We left with her wearing one of the pairs and she seemed almost more stable already. Here's hoping they will help her to learn how to run!

There is another little boy here from the UK - 15 month old Jan who has a very rare cancer in his abdomen. His mum has come over on her own with him and they were preparing for the CT simulation when we were waiting for Millie to go in. Jan was possibly exposed to chicken pox just before getting here and he is not allowed in RMH until he is no longer at risk of giving it to other kids, particularly those on chemo. They are staying in a hotel and are effectively isolated. We had a long chat with his mum who was, understandably, having a hard time. I can't imagine getting through the last few weeks without the support from my husband, even now it needs 2 of us to do the caring and the support. I would be worn out and on the verge of a nervous breakdown if I was by myself.

Millie had her CT simulation 4 weeks ago today. We arrived here 4 weeks ago yesterday. Hopefully we will be finishing treatment in 4 weeks exactly. We are half way through our stay. It feels like a lifetime. One step at a time.